This is a post I've thought about writing for a while, but kept putting it off because I was worried it would come across as a pity trip (which doesn't sit well with me) or worse. I've been up for the last two days with a son who managed to come down with the flu or other "mimic" type of virus and had received some e-mails from people who had, I honestly do believe, good intentions on helping me to be a better parent and getting my son to eat in a way that would help his autism. I thanked them for their advice and just moved on. I've learned to do that over the years. Well, mostly. I'm getting better at it. No, really I am!
What finally got me to write this post was actually another autistic parent who wrote me. Her child is much younger than my son is and she was actually writing me in desperation to see if I could give her some insight into getting her son to actually eat. Not eat "real food", which is my continuing quest with my son anymore, but getting her son to eat any food at all other than powdered rice cereal. Her son had been diagnosed with autism last week and had been diagnosed with failure to thrive at the same time. She'd been in to see all the specialists for months and wasn't getting any answers on how to help him to eat anything but the powdered rice cereal. She was desperate for any advice I could give her. Literally a hand reaching out to someone who she hoped would understand and just hold that hand in understanding. I gave her as good as advice as I had, which probably would amount to about two cents, but I hope I at least gave her some ideas on where she could go next to try and help her little man.
I could feel her panic, her sense of failure and utter helplessness through the e-mail. Not because she was the most eloquent writer I'd ever read or anything (not that she did a bad job, mind you. She got herself across just fine), but because it brought back so many memories for me. I'd been there. And I felt so, so much empathy for her.
So, I thought I would just put this out there and ask that the next time you see a person load up the belt in the grocery store in front of you with junk food and someone kiddingly asks where the party is going to be, only to hear the person reply that there is no party that they have an autistic child, please reserve judgement. You have no idea what that adult has been through and that they may be very, very grateful that their child is eating food, any food at all. Calories are calories sometimes and we know it well.
Alvah's struggle with food and his digestion started on day one. Literally. Within a few hours of being born he started choking if he was lying down. The nurses at the hospital assured us that often times newborns would choke on amniotic fluid that was left over in their lungs and things and so long as they were able to clear it they would be fine. I quickly found with Alvah this was not the case. I had to literally keep him on my chest with me elevated to stop him from waking up choking on whatever he had eaten before. A week into his young life, the first day we got him home from the hospital, the projectile vomiting began. He would choke and vomit to the point breast milk/formula would come out of his tear ducts when you were feeding him. It was terrifying and all too regular of an occurrence with him. His dad and I would hold him like we were holding dynamite with a questionable detonator on it, waiting to see what would happen. I had to feed him a half an ounce at a time and then burp him and pray. We got him down to where he'd vomit once every couple of days, than a week.
I took him to our pediatrician at the time only to hear that some children "were like that" and he'd "grow out of it". I actually asked point blank if it was normal for a child to puke like a scene from the Exorcist and she told me yes, yes it was. I've since talked to occupational therapists and feeding therapists throughout the years who want to hang the woman by her thumbs for making him suffer like that as they knew tricks that might have helped him. It took him YEARS to grow out of regular vomiting episodes. Stopping him from vomiting when brushing his teeth became a huge deal, getting him to take any type of medicine was an even greater one. And he still had to remain elevated or he'd wake up choking. When he was 18 months old I finally moved from our couch as he was getting so big we were barely fitting and figured out other ways to help him as much as we could to keep food down and grow.
Somehow, despite his body hating to keep food down and being covered in eczema all the time, somehow he grew tall. Didn't have an ounce of fat on him, but he was always a tall kid. He finally submitted to me introducing solid foods at 11 months and he would only eat powdered rice cereal with applesauce and formula mixed in for about another 4 months. Nothing else worked with him.
And then, blessedly a few things happened. My in-laws let my son sip some soda out of a straw and try a french fry from McDonalds (things I wouldn't have had the guts to try with him as I was terrified of him choking or projectile vomiting). And he actually loved it! For the first time my son was actively chewing things and keeping food down. He then discovered cow's milk in his bottle and had no problem transitioning to that as well. I started working with him, carefully introducing new foods and I MEAN carefully, and I found that he actually did like some foods. He loved my home made chili, minestrone, pizza, different flavored rice dishes...I thought we were finally on the way to a real food diet and I could finally get him off of powdered rice cereal and applesauce.
And then his skin kept getting worse. His behavior, which had always been "not quite right", started getting worse. He developed fixations on anything that spun, wouldn't answer to his name still, wouldn't point, wouldn't play with toys...the list went on. He developed an unhealthy obsession with flicking paper and if the paper would tear when he was flicking it he would find the nearest hard object and bash his head into it repeatedly...benchmarks and milestones started passing him by. At 21 months we got him into infant learning and were introduced to the M-CHAT and got the advice to seek out a developmental pediatrician to find out for sure what was going on. Finally when he had just turned three, we got the diagnosis of autism. Six months later, in an attempt to help his eczema and hopefully get him to concentrate better (and thus help him deal with his autism better) I got him into an allergist.
I deeply regret going to an allergist back then. I know it's stupid to say that because allergies are nothing to mess with, but before we got the food allergies diagnosed, Alvah was happily eating peanut butter, chili and other food items. We got the allergy results back and found out that he was allergic to peanut (severely, which over the years has turned into a life threatening, nothing to mess with allergy), garlic (this ended up being the big one with him on loss), oats (which threw out his favorite organic toddler greeny puffs), coconut oil and derivatives and others.
This is where my empathy for that mother kicks in, in a big, big way. We were told garlic was a life threatening allergy and we took it very seriously. I started making my own chili powder because, it turns out, pretty much everything in the entire universe has garlic in it if you cook with it. I tried to make flavored rice that wasn't from his favorite packaged brand...he would have none of it. Where I had him eating tuna fish sandwiches, once I had to make my own Miracle Whip or mayonnaise, he wouldn't touch them. Chili was turned on so fast when the chili powder didn't have garlic in it.
The list went on. Fast forward six months to us, in desperation, going to a nutritionist and dietitian to try and get my son to eat something that wasn't cardboard, dirt, tire rubber, or uncooked white rice. That was literally all he would eat, whether you liked it or not. It got to the point where I'd try to get him to eat in his bouncy seat because it was the only thing that would keep him somewhat calm at feeding time and I'd turn around and find him digging under the edge of the carpet and eating any dirt he could get his fingers into.
The nutritionist looked him over and told us not to panic because he still had some body weight left. He had lost nearly 1/3 of his body weight and he didn't have much to spare to begin with, but with his height being so high he didn't fall into the "failure to thrive" category, even though he was in the lowest 20% for weight. They gave us a feeding schedule to put him on and other things to try, but didn't give us any real advice to help his PICA recede and his want to eat anything resembling food to present itself.
We started him on intensive feeding therapy for years at OT after that to try and get him to eat anything that was safe for him to have. The foods that probably saved his life, and I wish I was joking here, was "Enjoy Life Chocolate Chips" and McDonalds french fries (once we found out that they just plain didn't make his skin or anything worse and just said to heck with it and started feeding them to him out of desperation). He would eat the mini chocolate chips, it turned out, by the carload, which was a blessing as well.
My father passed away the year we saw the nutritionist. That happening and a dream my step mom had about me (a discussion for another time) made me realize that I had to find a new pediatrician who knew my struggles and would be able to offer real advice to help me. And so, I found our current pediatrician. When I called her office and spoke to her secretary, I, on the verge of tears, said that I needed someone who GOT what it was like to have an autistic child. The receptionist calmed me down and then cheerfully informed me that the pediatrician had an autistic son and then asked me to come in and meet with them and talk to them. I took Alvah in to see them the next day and had a introductory exam done. The doctor was concerned about his weight, just like I was, and she calmly asked me, "Is there ANYTHING other than cardboard, dirt and uncooked white rice that he'll eat?" I told her McDonalds french fries and the chocolate chips. Her reply, "Great! I always tell parents of kiddos like him to find ONE high calorie thing they'll eat and feed it to them as much as they want it. Go with the chocolate chips. It'll keep a bit of weight on him if nothing else." And so we did.
Finally after a couple of years we lost the garlic allergy and we started introducing back in foods that had previously been happily consumed to Alvah's diet. And we quickly found out that when autistic kids drop a food? They have this bad tendency to drop it forever. It's fun like that. I've tried for years to get him to eat chili again, or minestrone, or pizza. I get a thrill when he takes a bite of pizza that I put on the table, but so far it's not a constant. He did discover he liked Cool Ranch Doritos one day at a family get together and he found Cheetos by stealing them off of my plate one day out of curiosity (one of my guilty pleasures). Those two items, along with Tilamook cheese (another random thing he grabbed off of a plate and liked) and the ever constant milk (that he drinks out of a bottle at night), have managed to put some weight on him over the last few years with the on again, off again, like of Oreo and Chips Ahoy cookies. It's kind of nice walking into the pediatrician's office, or the dentist, and hearing, "Alvah, you've gotten fat!" in a kidding way and then them gushing about how his face has filled in and he doesn't look skeletal anymore.
To the few people who have suggested different diets to me to try and help Alvah, I appreciate it, I really do. In the past, in desperation to help his behaviors, PICA and eczema we have tried pretty much everything. On the list (since these are suggested a lot)...
1. The gluten free diet (resulted in him reducing to an animal state, basically drooling in a corner for 3 months before I said enough and stopped it).
2. Saw a naturpath and tried doing a structured gluten reduced diet, along with dairy free, corn free and potato free with various herbal supplements and vitamins to help heal his gut. Failed. It was a struggle getting the supplements and vitamins down him, but I did manage it, but we just didn't see any change in his eczema or his autism behaviors.
I'd go into the other things I've kind of forced on the poor kiddo in the past to see if I could help his allergies (honestly, helping his autism through diet lost it's appeal to me after the gluten free massive epic fail as seeing him so withdrawn and miserable...I never want to see him like that again. Ever), but it would take a couple of large volumes. I studied herbology to make all his skin products when he was diagnosed allergic to pretty much everything that could go on your skin, made yellow dock root tincture to get iron into him when we found out he was anemic (and it worked so the battle was worth it there). I read every new study that comes out and think hard before I try something, but I do try.
So, yeah, when people tell me that I don't try hard enough to feed my son healthy meals...I kind of see where they'd get that impression looking at what I buy for groceries. But you know what? I will gladly buy that box of s'more pop tarts because I know my son will willingly eat breakfast. I will continue to buy soda because it is the ONLY thing we've found that he'll drink out of a cup at all, but also the only thing he'll drink other than milk out of a baby bottle and there is no way I will not buy soda and have him lose the skill to drink out of a cup as it was hard earned! Every hot dog bun top he eats means he's eating bread, not cardboard. Maybe not the type of bread I'd like him to eat, but we're getting there! Every food he picks up, whether it be weird (garlic stuffed olives for instance), normal (like the breadsticks I made for dinner last week that I pray he will continue to eat), processed but decent (Bumblebee tuna salad) or even wholly processed junk calories (like Cheetos)...it's a small mark on the "he's eating" list and I know we'll get there eventually.
So, to all you parents with your belts loaded with junk food who mumble embarrassed about your child's diet? Don't. You're doing fine. At least I think so...for whatever the feedback of some random person on the internet might mean to you :). And to those who wish their child would eat, at all, I feel for you and I wish I could help. I really do. I know what it's like to see your child suffer and not know what to do. It's hard. And to those who have it worse than we do, and I know there are plenty, I admire you and I really wish I could help all of you and at the same time I can't help but feel grateful that we are where we are and are at a point where we can cope. I pray to those families who don't have it as good as we do that one day you too can look back and see how far you have come with pride. Good luck to you and God Bless!
And thanks to those who read this headache fueled ramble as I wait for children to go to sleep and pray I'm not getting sick as my throat starts to hurt. When it comes down to it, special needs parent or not, parenthood is the most challenging thing you can do, but also it is the most rewarding. We all do the best we can do. And really, that is all that matters :).
